One day at a time

The big day has finally arrived! I mentioned weeks ago that a birthday present for 2 teenage girls was a shopping trip to the Westfield, Shepherds Bush and tomorrow is D day. They are excited….not so sure about Duncan. The words cold feet spring to mind. I will make a decision whether I can manage to go with them in the morning – at least there is plenty of disabled car parking and lots of coffee shops. I think that there may even be shopmobility and the option to borrow a wheelchair if it all becomes too much – and that is just for Duncan! So the girls have their vouchers and their birthday money, and instructions about what is considered a suitable purchase that mother will allow them to wear. Oh, to be a teenage girl again…or not.

Meanwhile another one of my group is currently undergoing a scs trial, whilst another has had hers cancelled as she needs another operation. She is absolutely gutted after struggling with chronic pain for years. Yes, she has another condition that is causing her pain and obviously requires treatment, but she has a back story that is very similar to mine and so many others – an initial back problem from a bulging disc, several failed surgeries and the resulting pain which nothing helps. Drugs, side effects, sleepless nights, the desperation that sets in to find something, anything and it becomes a vicious circle. By the time we arrived at the inpatient programme, we two had definitely been round this block several times and taken our respective families with us. But we gelled immediately and understood each other, so this is why I can understand how desperate my friend is now feeling because I’ve been there.

Personally, I’ve felt rough for the last couple of days and I think that I probably have tried to carry on and overdone things. The overwhelming need to be able to tell everyone that you are feeling great and that yes, it has absolutely all been worth it, is enormous. On Friday I decided that I needed to show my face at a coffee morning hosted by the head at my daughter’s school. A downside was that it was from 8.30 am – a dreadful time of day for me. But I made it and my friend and I duly poured coffee and snacked on mini danish, before the first friendly face popped over to say hello. This was followed by a couple of other parents, and then I spotted a friend talking to the headmistress, who has been very supportive of the whole family over the last year. She immediately wanted to know how I am doing, as did my friend whom I haven’t seen since the beginning of term. I could feel myself becoming clammy and faint, and the ability to speak with any clarity disappeared rapidly as my senses seemed to fail me.

On returning home – still only 9.30am – I had 2 more visitors during the course of the morning. Whilst it was lovely to see everyone, I just felt like I was on a loop as I tried to describe the effect that the stimulator is having, no it isn’t a cure, hopefully it will help me to be able to function better etc., etc. Someone else has commented today that I seem to be disappointed in my stim results and I am sorry that I may have given this impression. It certainly hasn’t given me a magic wand to waft away all the pain, and the relief I experienced during the trial was different to that which I’m feeling now. I’ve already mentioned that I require a higher level of stimulation voltage on the lithium battery, and that I can understand that I am adjusting to and thus becoming used to the sensations. I am a bit worried that I will continue to need higher and higher levels of stimulation and will thus “run out” of options as I reach the top dose! But rationally I know that this is a very long way off and that the changes are due to being more mobile and the stim is not yet scarred in place securely yet. One reason that we are not allowed to sleep with the stim turned on, is that it is important for the body to have periods of non stimulation, so that it can really appreciate it when it is switched on. The parasthesia should not become a new base line.

So it is tough explaining the results over and over, when the expectation is so high. Our expectations on ourselves are the highest though, and we all desperately want this treatment to be the answer to our prayers, so if I can have more better days and nights than not, then I have won the lottery.

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4 thoughts on “One day at a time”

Perhaps Alexander and I could come too? We could get the Oxford Tube; it drops off at SB.

Give Duncan and you a break with the girls? and I could window shop with them, ohh tell me there’s Louboutins there? What I’d give to clip clop up the street flashing that red…..even just to balance on the 4″ inch heel in the shop would be enough for me.

It would be great to see you all anyway, and we’re on half term for two weeks.

Hi Claire,
It was so good to read about somebody who is going through scs, possibly a few months ahead of myself, and I am so glad I found your blog!
Combining family life (or even just life!) with chronic pain and decreasedmobility is a challenge that I too face, and loved reading your story!

I’ve just heard I have finally been accepted on a trial of the scs at Chelsea&Westminster.
I had the triage 4 years ago, and I was ‘too depressed’ to be considered(!) but finally have been given the go ahead for the trial prob in December.

I felt very alone, as people ‘of my age’ are not usually so immobile or restricted, (although having lived with chronic pain for 16 years, I’m now creeping into that older person stage myself!) so it was a relief to find somebody else facing similar challenges!

I’ve also always felt very guilty that my children (now both at university) have had to see me in such pain, reduced from a vibrant mum playing on the swings and holding down a career as a primary school teacher, to a huddled form in a wheelchair or bed, trying not to cry in pain.
I will never really know how this has affected them, but I hope that it hasn’t had a detrimental effect. When we went to school events I was always conscious that they might be embarrassed to be seen with me in a wheelchair. This however was me putting my feelings onto them, because I had resisted the chair for so long. My son, I discovered, loved pushing me, doing wheelies and slalom events, although my daughter refused to push me if I squeale ‘wheeeeeeeee’ going downhill!
Sorry. This comment is almost a blog itself!
I’ll read your future posts with interest!

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